Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 14 Sep, 2018

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2018 to 31 Aug, 2018

Specific Details Legislitation for an opt-out consent system for organ donation in Ireland

Intended results Implement legislitation for soft opt-out system for organ donation in Ireland

Name of person primarily responsible for lobbying on this activity Nicola Cassidy

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Letter (1)

A letter was emailed and posted to Minister Simon Harris on 11 July 2018 to request an update on the status of the Human Tissue Bill and the introduction of legislation for consent for a soft opt-out consent system for organ donation for Ireland.

Letter (1)

A letter written and emailed to Minister Catherine Byrne seeking an update on the Human Tissue Bill and the delay in the introduction of legislation for consent for a soft opt-out consent system for organ donation for Ireland.

Letter (1)

A letter written and emailed to Minister F'inian McGrath seeking an update on the Human Tissue Bill and the delay in the introduction of legislation for consent for a soft opt-out consent system for organ donation for Ireland.

Meeting (1)

The Irish Lung Fibrosis Association (ILFA) met Minister Catherine Byrne at the Launch of the Irish Thoracic Society (ITS) ) Patient Registry and Position Statement on the Management of Idiopathic Pulmonary Fibrosis at the Royal College of Physicians of Ireland (RCPI) on 31 August 2018 and were photographed with her. The Minister was presented with an ILFA Newsletter. Her photograph (taken at the launch of Organ Donor Awareness Week, March 2018) was included in the newsletter. ILFA is a member of the Irish Donor Network (IDN) and Philip Watt (Chair of IDN) met with Minister Harris on 23 July in his capacity as a representative of the Medical Research Charities Group in relation to rare diseases. A request for the IDN to have a meeting with Prof Jim Egan (Organ Donation and Transplantation Ireland) was discussed and subsequently sorted by his office.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Simon Harris Minister (Department of Health)

Catherine Byrne Minister of State (Department of Health)

Finian McGrath Minister of State (Department of Health)